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About Us - LWA - Lipedema Word Alliance

What is...


Lipedema has been described as a painful, symmetrical, fat distribution disease of the extremities with a pronounced disproportion to the trunk. Hands and feet are typically spared, resulting in the development of the “cuff phenomenon.” The disease “lipedema”, known since 1940, when it was first described by Allen and Hines, is increasingly better understood. In particular, oedema is not significant in this fat distribution disorder of women’s arms and legs. This and other scientific findings are “work in progress” and part of the goal is also renaming the disease.

In addition to fat mass expansion with an increase in the circumference of the extremities due to hyperplasia of the adipocytes and hypertrophy of the subcutaneous fatty tissue itself with the typical change in body shape, i.e. the silhouette, the obligatory paraesthesia or numbness, sometimes presenting as pain even on discrete stimulation, and sometimes an increased tendency to haematoma in the affected areas are also considered to be characteristic leading symptoms. It affects almost exclusively women, with an estimated prevalence of up to 10%. The initial manifestation of this chronic, potentially progressive, disease often seems to be triggered during periods of hormonal changes such as puberty, after pregnancy or menopause, but hormonal contraceptives are not a recognised trigger. Obesity can be an independent second disease in women, coincident with lipedema, but this coincident disease does not promote lipedema.

The pathogenesis of lipedema has not yet been adequately clarified. At present, there are no imaging, serological or genetic tests, and no clinical measurement instruments for the diagnosis. Lipedema is therefore identified by clinical examination and medical history and remains as a diagnosis of exclusion. There are conservative lifelong therapies and surgical treatments that lead to lasting improvement of the condition as with multi-stage surgical therapy (lymphatic vessel sparing liposuction). Complex physical decongestive therapy (CDT), although not always necessary with all its elements, can be an important and effective treatment. All therapeutic interventions aim at alleviating the symptoms and preventing or delaying progression. The progression of the disease, as far as limb volume increase is concerned, has been associated with weight gain, so a stable weight should be one of the goals of managing lipedema.


Lipedema World Alliance

LWA wants to create an environment where healthcare professionals, researchers and patient associations from different countries collaboratively explore many unanswered questions around lipedema and promote scientific dialogue in order to accomplish the goal of improving the understanding and care of people living with lipedema.

Working together we can make a change

Lipedema has long been a Cinderella disease, ignored and neglected. Recent interest and research have often been driven by patients’ desperation and passion to find answers. Lipedema needs to be researched further and we want to do this together.


What We Will Achieve Together

As there is still so much to learn about the pathology of lipedema and the best ways in which it can be managed and treated, LWA believes passionately that the best way to discover the optimal approaches is to do so in a collaborative spirit, patients’ advocates and professionals coming together. We feel this collaborative effort will promote the following:

A dialogue of priorities and concerns amongst patients, clinicians and researchers

Identification and priorization of areas where research in lipedema should continue and should not be limited

Development of unbiased educational materials supported by science

Access to diverse research participants from across the globe